Detailed contribution information
| Contribution title | 3002 - ENCORE: experience of cross-disciplinary collaboration for children with rare hereditary neurodevelopmental disorders in the Netherlands |
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| Contribution code | PS03-01 (P) |
| Authors | |
| Form of presentation | Poster |
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| Abstract |
Objective During the past five years ENCORE, center of expertise in neurocognitive developmental disorders, Rotterdam, Erasmus MC has developed an effective collaboration of several disciplines, such as pediatricians, neurologists, motor and speech therapists, psychologists, child and adolescent psychiatrists, and neuroscientists. Multidisciplinary care, as well as clinical research, is offered to children with rare hereditary neurodevelopmental disorders. We will present a model of cross-disciplinary collaboration within the context of a children's university hospital. Methods Several rare hereditary disorders, such as neurofibromatosis type 1, fragile X syndrome, tuberous sclerosis, and Angelman syndrome, are characterized by increased prevalence rates of autism and attention-deficient/hyperactivity disorders in children. Furthermore, many children with these disorders are intellectually impaired. In ENCORE the care for these children is combined and organized in a multidisciplinary follow-up scheme. Depending on the main characteristics, questions, and concerns, different disciplines are involved. With the permission of patients and/or caregivers, clinical data are used for clinical research. Fundamental and translational research are being performed in order to explore new treatment options. Results Over 500 children with rare hereditary neurodevelopmental disorders have visited ENCORE, sometimes from abroad. For some of these rare disorders, the cross-disciplinary collaboration of neuroscientists as well as child and adolescent psychiatrists, next to all kinds of medical disciplines, is internationally unique. Daily care is locally organized with the help of national networks. Four clinical trials with experimental medication/interventions have been finished, with more to come. Conclusions Our model of cross-disciplinary collaboration with several medical disciplines and researchers offers an effective way to deliver care to children with rare hereditary neurodevelopmental disorders. The combination of clinical care and research is powerful. The acquired knowledge is not only effective in the assessment and treatment of these children, but possibly helps to understand more of autism spectrum and attention-deficit/hyperactivity disorders. |